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Author
Topic: Hello & Update (Read 9996 times)

I thought I would give a little update on how things have been going. I am still taking HAART meds, and have not started hospice care as of yet. I have been slowing down a little more each week. Sleeping more, having trouble eating & keeping food down and in. The pain in my lower intestine is getting worse, and the pain meds are sometimes hard to balance so they decrease the pain without the side effects.

My bone marrow is not producing enough red or white blood cells, so I have had a few transfusions, and have added a sub-q shot to help increase the white blood cells. I have also had an annoying cough that is slowly getting better.

Emotionally things are confusing. I naively thought that death was very defining. One day you are here, and then you are not. I understand now, that death is just a slow degradation of ones self, a little each day. Like a light bulb dimming each day.

I have been struggling with a fear of going to hell after I die. All the irrational thoughts I had as a child fearing hell, fearing a judgmental God are all right in my face. It is hard to sleep some nights, because I think if I fall asleep it is one less day that I have to live. So I try to stay awake to keep the day going. The crying jags start then, and I end up sobbing and usually make myself throw-up.

Part of me wants it to be over, part of me wants to keep fighting and not let the little bastard win. It is getting harder for Chris, and for my Mom. I don't want to leave them. I am going to miss them so much.

My crazy, wonderful family asked me what I wanted for my birthday. I asked for home made spaghetti, home made sauce and soft, squishy rolls with butter…yummy! What I did not know is that they themed the party with Mickey and Minnie Mouse. They rented costumes, and were standing outside when Chris and I drove up. Everyone was standing outside with mouse ears on; they had balloons all over the house, and decorated the tables with mousy items. It was wonderful! I laughed and laughed. I am blessed to have them.

I added some pictures. Minnie and Mickey started to act a bit inappropriately towards the end…Minnie was groping my husband, and we had to have words!

Sorry I have not kept in touch lately. It's hard to write about it. Love all of you. I think about you all every day.

I am glad that you posted tonight. I remember when I first joined the Forums in late June, I would always look for who lived close by. You're just up the road from me, sweetie. I have always felt I would impose if I suggested a visit, as I read about what you were going through. It fills my eyes with tears to read your post tonight. You are so brave, so strong, I only wish that you felt better and didn't have so much to deal with. Its so wonderful to see your pictures, all smiles on your birthday. Hang in there as best you can and please know that a lot of us think about you, all of the time.

Your courage, humility, and candor are marvels beyond my ability to articulate. Thank you for taking precious time to write what you did. If there is indeed a hell, you will be in a place that it is farthest from.

Please write as much as you can, here or elsewhere. Your words (and your talent for putting them together) are powerful, powerful things. Selfishly, I want as many of them in my head as I can get.

I hope you got your soft, squishy rolls! Also, I hope that decorating the table with mousy things did not include dropping chocolate nonpariels at random on the plates. I had a mouse once, in my apartment, that decorated my table thusly

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"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

All I can say is that I am still thinking of you and praying for you. I wish I could just give you a big hug (hug)! This is a difficult thing -- just lean on your family and on us! Take the joy of your great surprise party to bed with you at night and wake up knowing that you have our love in the morning. Please know that you are a strong, strong woman, and one who's posts comforted me when I was first diagnosed. Please let me know if there is anything I can do to comfort you now.

All my love and well-wishes,

Ty

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christine, thank you for updating us im sure i was not the only person wondering how you were doing. i love what your family did for your birthday and the pictures, it brought a smile to my face hearing about it and imagining you having such a fun time. keep fighting!lots of lovexxxxx

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I have just seen your post today. I think of you every day and was wondering how were you doing. I send you love and hugs. Happy birthday. I think you are already 41...2 more than me. I will be waiting for you to post next birthday´s pictures.

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Absolutely..those red knickers are a dead give away...did she really think she could fool us with those big eyes, that little turned up nose and her pretty polka dots...no siree, she didn't have us fooled for a minute...

I wanted to tell you "¡¡¡Feliz Cumpleaños!!!" (it means Happy Birthday). You deserve the best day ever and i can see you got it. So glad for it.You know... I have been told there is so much love waiting for us once we finish our things here on earth, that u really shouldn't worry about hell before going to sleep, naah .... I am sure all angels that are with you everyday were also wearing mickey mouse ears that day and sharing the party. None who is such a shinny soul like you are and such a beloved person should have worries, only love, peace, great dinners and great parties!!! Just remember God is love... and that is true.

Don't trust Minnie, a friend of mine dated her and said she wasn't a trustable girl . I agree Mickey could have chosen better ...that is also true LOL

I send you a big hug from distance, you see... your birthday is one of the most appreciated all over the world!!!

Juan Carlos (who would have gladly dressed as Pluto or Donnald Duck... or even Daisy Duck to make you happy that day)

When an ex of mine was dying with Non-Hodgkins Lymphoma, I remember feeling mostly a jumble of emotions. Reading your words has brought that time all flooding back. Clearly you are deeply loved and that speaks volumes to who you are as a person.